Accepting life with Lupus

April 30, 2016

Coming to terms with my lupus was not easy but I have always been a person who sees the glass as half full. Just about everything about my life had to be changed. I needed naps and took them. I had to cut back on a busy social life because I had no energy. I stopped shaking hands with people because it hurt too much.

Before getting sick i had grand plans. I was going to live in Chicago, have a career as a sports writer writing about the Cubs, go to all the Cubs home games, play tennis and eventually get married and have kids. Lupus seemed to have stolen all of that away from me. I had to move from Chicago because winters made me very sick. I was told by my doctor not to have children, it could trigger a massive flare-up that had the potential to land me in the hospital. I could no longer play tennis. I moved from most of my friends and my family and was forced to start life over. I’ve met some people who wallowed in self-pity. I saw it as another adventure.

In the 20 years I lived in Atlanta I worked, got married…. and divorced, made new friends and got involved with the Lupus Society of America – Georgia Chapter.  I started freelancing as a way to take better care of myself, and was never at a loss for assignments. I wrote about computer hardware and software, swimming pools and spas (and got to interview Esther Williams). I wrote about fences, security systems and shopping mall construction. I also edited publications in the HVAC arena and a couple of medical publications. At one point I saw an ad for a freelance environmental writer. I applied and within four months was promoted to freelance news editor. It kept me busy for more than six years. I got to tour such glamorous facilities as waste treatment plants and drinking water plants. I toured Lockheed where the big military cargo planes are built and a huge Budweiser facility in Cartersville, GA, to see how they were “environmentally friendly.” I also had a tour of the Savannah River Site facility in South Carolina. I got security clearance to tour the area where nuclear waste was turned into glass. From there it would be shipped to caves within mountains in the west. That was fascinating. I was meeting new people and learning so muck. I covered the environmental aspects of the Super Bowl when Atlanta hosted it in 1994, and also covered the environmental impacts of getting ready for the Olympics, which Atlanta hosted n 1996.

In 1994 there was great flooding in Georgia, just south of Atlanta. I had gotten a call to join the governor of Georgia in his helicopter to tour the most badly hit areas. As I was leaving for the airport I got a call that I had been bumped from the flight by then-President Clinton. Bill still owes me an apology for that! My position at the paper put me in direct contact with top Georgia officials from the governor and various city, state and U.S. officials, to the top officials for the EPA and EPD, (Georgia Environmental Protection Division). I was never at a loss for stories. These people called me. It was great fun, easy writing for me, though much of it was technical, and I ran myself ragged. But I kept going because I loved what I was doing.

It was during that time that my doctor asked me to take a class and get certified to teach a lupus self-help class. His theory was that I would be a great person to help newly diagnosed people and show them how I was living with my lupus. I took the class and met others who were living with much worse cases of SLE than mine. At least mine wasn’t affecting my central nervous system.

I enjoyed teaching the class and I learned a whole lot more about lupus and realized I really had accepted this awful disease. I learned that you do have major losses, which I’ve mentioned and you need to mourn those losses. Everyone mourns differently. Mine losses seemed huge to me but my mourning period was short because I had living to do. The most important thing I learned was that inherently I knew I had to prioritize my days. I would have students make lists of what they needed to do the next day and then prioritize what was on that list. I did the exercises with them. I realized I was already doing this subconsciously.

I found my passion for hockey reemerge and became passionate about greyhound rescue and cruising. That cruising passion led me to a job with where I was community supervisor, which meant I answered questions, made sure everyone was following the Terms of Service. I organized the first on-land cruise get-together and led the first Cruise Critic group cruise.

But I was always exhausted. Looking back on it, I was prioritizing my life, but still doing way too much. I’d feel like I could do things, like write three articles in a week for different publications, but then I’d hit a wall and couldn’t move. I never went out of my flare. I was envious of those who went into remission. I never did.

I became extremely good at predicting tornadoes. Tornado pain is much different from heavy rain pain or even snow pain. One night I felt a big tornado. The Weather Channel was showing it on the ground moving directly toward my house. I got the dogs (three greyhounds at that time) and half way down the basement stairs I felt the thing shift direction. I slowed down, let the dogs out and sat by my pool while I waited for the dogs. It was an eerie thing – very quiet and still but I knew I was okay. The next day the weather casters were talking about that tornado. It did shift directions and took aim on two huge apartment complexes. It demolished one of them – two miles from my house. My husband was not happy when he found out I let him sleep through it all, but I told him there was no need to wake him. I was sure and I was right.

For a while I was editor for the Alabama and Georgia editions of a magazine called “Nursing Matters.” Once a month I had to go into the offices to do the layout on their computers. We were owned by the same company that owned The Weather Channel and we shared office space with those employees. One day I was waiting for a fax when one of the on-air guys from the beginning walked in to send a fax. We were talking and I asked him the rain chances for that day. He told me less than 5 percent. I told him it was going to storm within the hour. He looked at me and looked outside where it was sunny and there were no clouds in the sky. He thought I was nuts. Forty-five minutes later he found me at my desk and told me I was better than their computer models. It was storming.

While living in Atlanta I also started a real estate investment company. I bought foreclosed homes and rehabbed them and sold them. I kept one as a rental and turned it into a Section 8 rental. I wanted to help those who needed help. I did very well with that company but it finally became too much for me physically.

It may sound crazy, but all of these things I did, and more, would not have happened if not for the lupus. Am I happy to have it? Hell no. But I never would have had the experiences I did if I’d stayed in Chicago. I just figured out how to work with the lupus. I thought I was able to take care of myself, but I was still getting really bad flares.

In 2002 things started getting really bad again. I was having problems with my left knee, and was falling. I was always tired and had no energy. I gave up the real estate and my position on the Georgia Real Estate Investors Association  board of directors. I had knee replacement surgery in 2003 on my left knee, and at that time had my right knee scoped. I was told I’d need that one replaced within a year. Well, that didn’t happen. I got divorced and got really sick. My house was way too big for just me, caring for three dogs and a cat was overwhelming. I was really sick again. I moved back to Chicago with the help of my family. I found homes for my three dogs (two greyhounds and a little mini-lab/beagle mix rescue) and brought my cat back to Chicago with me.